The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear
In this paper, we propose a vision of the role of parent/caregiver with children affected by a rare disease. This vision is rooted in data obtained from our own research; however, our analysis and interpretation of this data have been subsequently checked against existing theoretical models. The res...
| Main Authors: | , , , |
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| Format: | info:eu-repo/semantics/article |
| Language: | English |
| Published: |
MDPI
2021
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| Subjects: | |
| Online Access: | http://hdl.handle.net/10835/10494 |